I really don’t know what to say…I was in tears reading your story…
You understand how I feel when my mother acted up. I got embarrassed around other people, as I couldn’t control her behavior. I knew it was the stroke and her reaction to it that make her this way, but it was hard to accept.
Your mother endured A LOT of pain over the years. Terribly sad that she had to live like that. God love her! It is heartbreaking to read that story. She only had you to help her.
Your are right to just let things go with your father. He did you all wrong, and that is on him. I’m sure you still love your father, despite all the pain he caused your mother and the rest of the family. You are too warm-hearted not to have.
You understand mental illness, Roland. Many people were not sensitive to my mother’s odd behaviors, etc. My sister and I, along with dad, couldn’t accept our mother as she was. We wanted the “old her” back, but she wasn’t go to re-appear. The stroke took that from her.
Wow - your story touched me in a profound way. It helps me to see my own pain with my mother in a different way. I can imagine how hard this was for a young boy to watch his mother in so much pain all the time. Not only that, you had to care for in an adult-like way at such a young age. But you DID it. What a great son you were to her.
In the end, no matter how painful the story, you learned lessons from it. I, too, learned lessons from taking care of my mother after her stroke. I am in a lot of pain. I miss her so much, but the life she was living post-stroke was no life. She didn’t have the spark, the drive, or the overall mental capacity to carry on. Her mind was too far gone.
Only my wife and sister know this story. A few others in the family know only partial facts, but what I went through is quite beyond what a 13 year old kid should be exposed to. I see a lot of similarities with your mother, even though the details differ. Perhaps we are empathic because of our backgrounds, either way, there are a lot of experiences we might have lived in common. I can feel that by the way in which you express yourself on this forum.
Now I find myself struggling with my own life. I am tested to the limits; in pain, limited in my abilities. I will try to hold on to my sanity, and live for my wife, sister, cousins, uncles, aunts, certain friends, and myself and try and find the strength to keep afloat.
Even though my father was right there with me taking care of my mother every day, I still felt trapped and completely alone. Extended family members, sadly, did very little to help us in any way. Many of my mother’s sisters are approaching elderly years, I understand, but her one much younger sister lived up the street and did basically nothing. I don’t resent her, but I just don’t understand: she loved my mother so much, though she wouldn’t come to help us when she knew we were in great need. It was my father’s two sisters who gave us way more compassion. In the end, it doesn’t matter who did and who didn’t. Dad and I were all alone. We are stronger and better people for it somehow.
I knew a woman who took care of both her mother and father in their elderly years. One had cancer, and the other had dementia. I think that’s right (can’t remember). This went on for 7 or 8 years. The burden was all on her. Her husband had already died from a sudden heart attack in his late 50s. Sisters and brothers wouldn’t help her. She about lost her mind, but she persevered. She said she learned many lessons, but two, in particular: you never know what someone is living through when you’re talking to them; and the second one, it’s caregivers who care for other caregivers.
It’s great to hear you’ve got so much from this forum. It has helped me loads too…especially in the early days after my stroke.
Being a carer is a massive responsibility (i had to help mum care for dad through his cancer battle so have some experience) & I have massive respect for my mum who was there 24/7 for him & put her own life on hold for a long time.
I also have huge respect for anyone who cares for others in whatever capacity. I understand though when someone who you think should help isn’t around as much as we’d like. Sometimes that’s because they don’t realise you’d like that help & we perhaps don’t ask. Other times its because they can’t cope with it. It’s not for the faint hearted after all. We never quite know what’s going on in others minds / lives.
Hats off to you & your dad. It must have been very tough for you. Your mum would have been very grateful to you & would know she was loved. Hopefully that gives you some peace so you can enjoy your life as you’d want to & she would want you to Xx
Welcome Dustin in an odd way this forum is amazing when you feel down and you are not told afterwards that doing odd things like looking for the phone which is beside you or other things freaks you out and people tell you it’s normal and make you laugh. The most support I ever had in fact the only support was from this group.
i had stroke 16 months ago affected right leg hand, so using left didnt fall , just got tired on a walk in sufolk was doing 4 miles ended up 5 as we were only holiday had to keep sitting down climbed up tall gate to sit on it but leg went down hard, so we went in chemist for advice, she thought i had stroke so we cut short holiday and drove to sisters in essex and she came with us to the hospital as the roads are changed since i worked there and the hospital,was there two days,hubby stayed the night at sisters then drove all the way home to somerset having to come back two days later, my right hand has improved, but cant write as good, i was 75 i get tired but have walked a mile, get more tired now as we are moving nearer son west midlands deryshire edge of
Shwmae Dustin, I was 44 when I was struck down by a bilateral cerebellar stroke, I can relate to many of your symptoms. It has been three years now for me and I have made progress but the incline is still steep.
Absolutely. My stroke was much milder without too much noticeable paralysis but your story about the door knob where your hand knows it is therebut your brain is taking its time to notice was all there. When it happened to me I thought ot how the octopus has its brain spread over its skin and has the same weird coordination problem with arguments between the different arms about where they are going next. I am amazed that you can do the cybernetics stuff. I can still not read fluently not even subtitles. That is what I used to do a lot. It is good that you are getting better and it will continue I am sure as it does for me. It might be good to keep a record of what you can do so you know how you are heading upwards and when it suddenly goes into reverse (which it will) you can see how little you have fallen back and how rapidly you get it back this time.
What I think is interesting is how everyone seems to have the same experiences: fatigue (which is differnt from tiredness), frustration and confusion. I feel I have so musc brain left and no more and I need to portion it out: so much physical so much intellectual. It never used to be like that; there was more than enough to go round.
Actually the whole experience is interesting in all sort of ways. I could have done without it though. Keep going. Let us know more
Philip
You mentioned that progress will reverse to a degree at some point. Thank you for mentioning that. I’ll try to keep that in mind as to not get discouraged when it happens. Maybe it already has and I just wasn’t cognizant of the fact that it would. I
I’d say I’m pretty functional on all fronts at this point. Although, I’m noticing I have to correct a few double typed letters right now.
I think it was really helpful finding this forum to get the feedback from others who have dealt with it first-hand, so thank you everyone for sharing.
I guess the last thing I wanted to share in case anyone here is reading and has just recently suffered a stroke. It was very frustrating at the beginning. It truly just takes time to heal, and patience was never a strength of mine. I hope my experience so far is of some help to you.
My mother had post-stroke regression, but it was her mind that got affected - not her body. She recovered very well physically from her stroke after 8 months. She became more and more apathetic over time, with worsening OCD and the beginnings of irrational thinking.
You just have to get control of it when you notice it. Not the end of the world. You just cannot let it get go, however.
Best of luck. Take good care of yourself. Everything is okay.
Thank you for your response. It is reassuring and provides hope for improvement of what still remains.
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I won’t say it’s great to hear you experienced similar symptoms.
For some silly reason earlier on I felt it very important to confirm my physical baseline. As a teenager I was into bicycle tricks (jumping ramps, etc) and one trick I was curious I could still do was to get on a bicycle backwards, pedal it and ride it. And I was still able to do it. Oddly enough, as a military guy, I tried to jog around the neighborhood block but stopped to walk half way because I was winded. Two years ago that same jog would have been no problem.
From the stories I hear from others, I know I am lucky to have a lot of the function that I do, but it is very frustrating to be so close to “normal”, and not knowing if I will ever return to it.
Hi free 3853, you are doing better than me if you can ride a bike in any way, forwards or backwards and able to jog! Both sound impressive to me! But I know exactly what you mean by not feeling back to normal. I’ve started to think I’ll just have to accept what I can and can’t do but I’ll still set myself challenges and try to achieve them. The next small challenge is to try getting in and out of my hot tub. Wish me luck! Merry Xmas love Suzywong
At least wait 'til after Christmas to attempt the hot tub. You should know by now that Christmas is a particularly dangerous time of year. I had my stroke on Christmas day. A friend of my hubby’s broke both her wrists just yesterday…in church would you believe:astonished: Think Christmas should come with hazard warnings
I just saw your reply. Now being over a year since my stroke, I believe I may be among the lucky few who don’t experience spasticity. The only symptom that remains now is my balance it slightly jarred. It is enough to cause me to fail a heel-to-toe sobriety check. I go to physical therapy and do exercises, which hopefully will help improve my balance, but it’s tolerable if it’s my new normal. It is for sure way better than it was in the beginning. I’m just getting ready to return to Germany to try to pick up where life left off. The main difference is I no longer smoke or drink and I take daily medication. Thanks for the encouraging words.
this forum is amazing when you feel down and you are not told afterwards that doing odd things like looking for the phone which is beside you or other things freaks you out and people tell you it’s normal and make you laugh. The most support I ever had in fact the only support was from this group.
